Communicating with cerebral palsy: Ruby’s story

Ruby Hamilton is a 10-year-old girl who lives in the UK. Like many kids her age, she enjoys playing games and watching movies. However, due to complications at birth, she was starved of oxygen for nearly 30 minutes, resulting in severe quadriplegic cerebral palsy affecting all four of her limbs, rendering her unable to walk, stand or sit independently. Join Medical News Today as we discover how, with the help of eye-tracking technology, Ruby is learning to communicate in a whole new way.

by Marie Ellis, Medical News Today 30 October 2014

Cerebral palsy (CP) is a group of neurological disorders that emerge in infancy or early childhood, permanently affecting body movement and muscle coordination. The condition is caused by damage or abnormalities inside the developing brain, which disrupt its ability to control movement.

In some cases of CP, the cerebral motor cortex has not developed normally, while in other cases – like with Ruby – injury to the brain before, during or after birth can cause the condition. In both cases, the damage is irreversible.

Though the disabilities associated with the condition do not get worse over time, as the child gets older, certain symptoms may appear more or less evident. Some of these symptoms include:

• Lack of muscle coordination (ataxia)
• Stiff or tight muscles and overstated reflexes (spasticity)
• Weakness in arms or legs
• Walking on the toes
• Difficulties swallowing or speaking
• Delays in reaching motor skill milestones.

For Ruby, the symptoms were apparent immediately, as she had problems feeding and sucking, and her body frequently spasmed. Additionally, she was not able to grip or sit, and she had difficulty holding her head up.

According to the Centers for Disease Control and Prevention (CDC), the average prevalence of CP is 3.3 children per 1,000 live births. Although there is no cure for the condition, supportive treatments, medications and surgery can help improve motor and communication skills.

Low-tech beginnings

“Despite her complex physical disabilities, Ruby is cognitively able and is a bright, cheeky and smiley little girl who faces her daily challenges in an aspirational way,” Suzanne Hamilton, Ruby’s mom, told MNT.

Suzanne found that from an early age, Ruby’s level of cognition was quite high – which is rare, given the severity of her physical disabilities. When she was very young, she received good input from speech and language therapists, and as such, Suzanne knew that finding a way for Ruby to communicate was of great importance.

At first, Ruby used symbols to communicate; Suzanne and others employed laminated squares that could be adhered to a clear board they would hold up, and Ruby would simply look at the symbol she wanted to select. In a way, this was like a rudimentary form of the eye gaze technology she would later use.

Over time, Ruby’s family created a communication book with hundreds of symbols categorized and filed under headings so that they could choose the relevant cards each time they asked her a question. Ruby then pointed with her eyes to answer.

She started her education at a mixed mainstream and special needs nursery, and then she moved to a mainstream primary school and junior school. When Ruby started primary school, Suzanne explains that they moved to an alphabet grid:

“This was a laminated sheet with the alphabet set out in a grid. When Ruby wanted to spell out a word, someone would point to each column and Ruby would look at the person when they selected the correct column.

Then, they would point to each row and Ruby would look up when they touched the correct row. This would be repeated until the word was spelt out.”

High-tech hopes

As Ruby progressed, her family started to look into slightly more high-tech options, beginning with a laptop and computer program called “Clicker,” which employed a big switch. For Ruby, this process was very physically demanding, as she had to hit the switch to select the row and column of the letter or word she desired and then hit it again when it reached the field she wanted.

Spelling this way was a long process, and because Ruby’s hand movements are very uncontrolled, Suzanne told us that “she would often hit the switch by accident and have to start again.”

Eye gaze technology, such as the Tobii I-Series, “was constantly in the background, but out of reach,” said Ruby’s mom.

As Ruby’s family was exploring these different ways of communicating, eye gaze technology was “constantly in the background, but out of reach,” said Suzanne. The technology works through a camera that tracks where the user’s eyes are looking, enabling him or her to move the mouse pointer around and click by blinking or staring.

When Ruby was 3.5 years old, she trialled a device with the technology, and following her successful trial, her speech therapist applied for funding for a loan device. Unfortunately, the application was denied.

A year later, Ruby was referred to the ACE Centre for further assessment. The resulting report suggested that eye gaze technology would be an important tool for her, but because the system was so large at the time, the specialists thought it would not be possible to mount it on her wheelchair, in light of health and safety standards.

This was a setback for Ruby, who instead had to use a laptop that responded to a switch she operated with her head.

“Ruby tried very hard to work with these alternative communication methods but struggled with the physical effort required, and her levels of frustration began to increase,” said Suzanne.

Undeterred, they again applied for funding for an eye gaze device and were finally granted one for Ruby to use at school; however, this device was not portable.

With eye gazing technology, Ruby has a voice

After working diligently for years, Ruby developed her skills in using the eye gaze device. Following discussions with her speech therapist, however, it was determined that in order for Ruby to continue to progress, she needed to have a smaller eye gaze computer, which could be mounted on her computer and school chair.

Following an assessment, the therapist recommended the Tobii I-12 eye tracker. This is a speech-generating device that facilitates communication via voice output, environmental control and computer access.

However, they were unable to get funding for the device, so Ruby’s family started fundraising on their own, as they knew the device was so important for Ruby’s development.

Tree of Hope, a children’s charity with close links to MNT helped Ruby’s family with fundraising, and MNT donated £10,000 ($16,145) toward their fundraising goal. With that help and through the support of various donors, they were able to purchase the device for Ruby.

She will start secondary school next September, and it was very important that she had her new device in time for this transition. After using the I-12 for a couple of months, Ruby has been “coping really well with the smaller screen size and the resulting smaller cells that she has to look at,” explained Suzanne.

“We have taken it out to restaurants and round to friends’ houses, and she has been able to use it in situations that would not have been possible before,” she added.

Having this portable, mountable device with speech output means that Ruby has a voice, allowing her to interact with her peers and teachers everywhere she goes. Suzanne told us that out of the classroom, Ruby did not have a chance to talk or get involved in conversations with her friends. With the new device, however, she now has that opportunity.

Describing the change she has observed in her daughter since she has been using the new device, Suzanne told MNT:

“Ruby has definitely matured over the last few months. She is very proud of her computer and much happier to show it off to family and friends. She can now use it for much longer periods of time without getting too tired.

She is also becoming so much faster at using it. We have tried to be stricter and have been getting her to use it to answer questions for us, when in the past, we would have looked at her facial expressions to know the answer.”

Most importantly, though, Suzanne said the device gives Ruby “a sense of independence, which is something that, unfortunately, she never gets to experience.”

An ongoing journey

In total, Ruby’s family has raised just over £14,000 ($22,620), which enabled them to purchase the Tobii I-12 eye tracker device, insurance, training days and a separate PCeye – which is used mainly for playing games and watching films.

Fast facts about CP

• CP is the leading cause of childhood disabilities
• Average prevalence in the US is 3.3 children per 1,000 live births
• CP cannot be cured, but treatment often improves a child’s capabilities.

However, their goal is £25,000 ($40,393). “There are always new pieces of software that Ruby needs, so we hope to be able to keep the fund going to enable us to purchase extra bits as and when they are needed,” Suzanne told us.

In addition, it is important to keep training up to date for those who work with her, and they are hoping to get Ruby a new electric wheelchair later this year.

According to the National Institutes of Health, assistive devices such as computers, computer software, voice synthesizers and picture books can significantly help individuals with CP improve their communication skills.

The organization adds that “many children go on to enjoy near-normal adult lives if their disabilities are properly managed,” which is the hope Ruby’s family has for her.

Contribute to the fundraising efforts for Ruby, visit her Tree of Hope page or donate directly to Ruby’s JustGiving page.

Source Medical News Today

Also see
Eye Tracking Communication for Individuals that are Non-Verbal My Child at CerebralPalsy.org